Tag: Personal

An Education Aside

So I have been thinking a lot about behavior and why I am able to effect significant change in a classroom when people purportedly more qualified than myself fail. I have come to the conclusion that my success is entirely the approach I take. This method was learned from my mother and from CBTU (now the Carmen B. Pingree Autism Center for Learning) in the 1980s. When my mom worked there, and my brother attended, CBTU was coming up with a Behavioral Therapy for autistic and otherwise disabled kids that was disconnected from what they called, “The Lovaas Method” at the time and we call Applied Behavioral Analysis (ABA) today. Their CBT was intentionally a deviation from ABA, which they described as far too ready to apply positive punishment to mold behavior instead of teaching kids explicitly how to act in school.

The take home point for this post is going to be that all kids think. All the time. Kids try to figure out stuff – often things they are developmentally incapable of understanding. Problem behaviors happen because they cannot understand something or they are unable to process some incoming stimulus. The sooner we realize that little Down Syndrome boy, the nonverbal autistic girl, the boy with cerebral palsy or Angelman Syndrome in a wheelchair are sitting there thinking, the better off we are all going to be. If you take the time to look in the eyes of a lot of these kids you see the gears are grinding and the kids are exploring the environment. They are planning. They are scheming. They are learning. They are looking for fun to be had and adventures to embark on.

Behaviorism vs. Cognitive Neuroscience

Before I dive into my point in the next section, I need to explain where my approach comes from. That means I need to define Behaviorism and Cognition, so the differences are apparent.

The easiest to understand definitions from as cursory google search was located here:

Cognitive psychology

Cognitive psychology assumes that humans have the capacity to process and organize information in their mind. It is concerned less with visible behavior and more with the thought processes behind it. Cognitive psychology tries to understand concepts such as memory and decision making.

Behaviorism

Behaviorism only concerns itself with the behavior that can be observed. It assumes that we learn by associating certain events with certain consequences, and will behave in the way with the most desirable consequences. It also assumes that when events happen together, they become associated and either event will have the same response. It does not note any difference between animal behavior and human behavior.

Both branches of psychology attempt to explain human behavior. However, they are both theories have been replaced by other approaches (such as cognitive behaviorism – which takes the best of both theories – and social psychology- which looks at how our interactions with others shape our behavior).

[…]

Comparing Cognitive and Behaviorist Psychology

The cognitive approach revolves around the concept of understanding why people act in specific ways requires that we understand the internal processes of how the mind works. Cognitive psychology is specialized branch of psychology involving the study of mental processes people use daily when thinking, perceiving, remembering, and learning. The core focus of cognitive psychology is on the process of people acquiring, processing, and storing information.

The practical applications for cognitive research include improving memory, increasing decision-making accuracy, and structuring curricula to enhance learning. Cognitive psychology is associated with related disciplines such as neuroscience, philosophy, linguistics, and instructional design. Researchers in cognitive psychology uses scientific research methods to study mental processes and does not rely on subjective perceptions.

From 1950 and 1970, there was a shift away cognitive approach and movement towards behavioral psychology that focuses on topics such as attention, memory, and problem-solving. In 1967, American psychologist Ulric Neisser described his approach in his book Cognitive Psychology. Neisser states that cognition involves “all processes by which the sensory input is transformed, reduced, elaborated, stored, recovered, and used. It is concerned with these processes even when they operate in the absence of relevant stimulation, as in images and hallucinations… Given such a sweeping definition, it is apparent that cognition is involved in everything a human being might possibly do; that every psychological phenomenon is a cognitive phenomenon.”

The behaviorist approach emphasizes observable external behaviors rather than the internal state of the mental processing of information. Key concepts of behavioral psychology includes conditioning, reinforcement, and punishment. The basis of behavioral psychology suggests that all behaviors are learned through associations as demonstrated by physiologist Ivan Pavlov, who proved that dogs could be conditioned to salivate when hearing the sound of a bell. This process became known as classical conditioning and has became a fundamental part of behavioral psychology.

To take this down to brass tacks, Behaviorism focuses on things that we do – outward behavior. ABA tends to describe this as the “dead man test.” Behavior = anything that we can observe a living person doing that a dead person cannot do. A classic example is that putting on clothing is a behavior; however, wearing clothes is not. A dead person cannot put clothing on, but they can passively wear clothes. As such, Behaviorism/ABA focuses on how we can modify the external world to change behavior, with behavior as a recorded output. Based on these definitions and relevant to this post, “thinking” does not qualify as a behavior, because the actual act of thinking is not outwardly quantifiable by an observer and thus fails the dead man test.

Cognition focuses on thought processes. How information is processed. So the outward behavior is less important than the thoughts/mental processing that underlies the action. This means that any cognitive therapy focuses on helping a person change behavior by focusing on helping them to understand or alter their internal thought processes. Data are recorded on not only the behavior but also by debriefing the person on what they were thinking, feeling, reacting to, etc. before, and during the moment the behavior occurred.

Both of these are flawed in that they ignore critical data the other focuses on. I fall under the category of cognitive behaviorism. I focus on how the environment results in behavioral change, but always through the lens that the agent is thinking about what to do, not just working on a stimulus-response chain. To hybridize the above definitions, I focus on how the environment changes out thought processes, leading to alterations in our behavioral choices. I then add to this a clinical neuropsychology approach in that I believe brain structure and function drive behavior. So if there are alterations to brain functions, then any behavior or thought processes are interpreted differently.

What is my model

My working model is almost ludicrously simple. It derives from cognitive behaviorism, which is the theory underlying Cognitive Behavioral Therapy. CBT has a strong emphasis on the assumption that misbehavior often occurs because the child (or young adult) does not know how to be well behaved or have never been taught there is a reason to not show maladaptive behaviors (i.e., a skills deficit). So misbehavior happens because of a lack of education. The child is not making poor choices, they do not yet understand they have a choice. They are just doing. I focus on ability gaps (knowing how to behave) because I have found the work of Ross Greene to be very influential in my practice. I started my approach before reading The Explosive Child and Lost At School, but these books shaped my methods into more of a coherent process than one being made up on the fly from scratch every time. Dave Altier developed a democratic classroom model that extended these ideas to entire classes, but that is beyond the scope of this post.

When there is the necessity to engage in behavior modification, which in my opinion is only when the intellectual function of a child is 2-4 years old, I use what I learned as a rat researcher. I have covered that here, but in précis: repeated, consistent reward changes behavior, fear and aversive consequences do not. Punishment breeds violence and rebellion. So I don’t use those methods. I praise. I reward. I give tokens. I tickle. I cuddle. I play. Kids grow.

A unique aspect of my approach is that, if a student is in kindergarten or older, I rarely use external, tangible, or edible rewards. I provide access to opportunities, access to my attention and time, or some form of social reinforcement. In that sense, I am a definitely an adherent to Alfie Kohn’s theory that we often create prompt dependence and harm our children by liberally applied and excessive, rather than the thoughtful and careful application of reinforcement strategies.

In a basic, behaviorist interpretation, in the absence of information, kids tend to be engaging in behavior to contact reward based solely on a history of that behavior contacting or accessing reward. However, this can change rather quickly with some knowledge. In a cognitive sense, they do not think before they act (or lack executive function).

My general approach to helping a student prone to behavioral episodes is as follows:

I spend 2-3 days watching the student behavior so I can ascertain what the people around the student are doing before, during, and after the problem behavior. Sometimes I use an A-B-C chart from my Behavior First Aid Kit and sometimes I just look for broad patterns when they are obvious and don’t require careful data collection to characterize.

I talk to the adults in the room to change their behavior to see if changing the environment is sufficient to change the child’s behavior (this is totally using the strength of ABA by changing the environment – the behavior of the adults – to see if the student responds favorably and saves us all a whole lot of work). Then I watch for 2-3 days doing a fidelity check on the adults.

I set a time to talk with the student privately so they and I can “make a deal.” In this way, I am very similar to Ross Greene and the CPS model. I have a series of conversations with the student so they can identify the problem or challenge they are having and brainstorm some potential solutions.

I provide the student with some datasheets THEY can use to keep track of their behavior. I am a huge proponent of self-management strategies as a primary method of effecting behavior change (here). I let the student decide what they will EARN when they reach a goal (no prizes, we earn things with good, prosocial behavior)

I model to the student how to fill out the sheet using myself as a positive and negative example

The student and I both fill out the form based on their timer beeping, and we compare answers at the end of the day and discuss differences

When the student and I agree, and the student KNOWS I will not punish their honesty, I cut them loose on their data sheet and behavioral plan

Lather, Rinse, Repeat as changes need to be made – always focusing on letting the student take the reigns as soon as they are ready

I also take care to do the following throughout the process:

Throughout the entire process, I engage actively in a differential reinforcement of incompatible behavior (DRI), which means I reward behaviors that CANNOT occur at the same time as the problem behavior. This results in VERY high levels of reward or praise. This also has the added benefit that when I tell them, “I cannot give you [X]” or “I have to walk away to work with Bobby now because he is ready to work” because they are making unexpected choices, the loss is clear and conspicuous.

When a student decides to behave and then look over to me for reinforcement, I tell them they need to go to whatever they are supposed to be doing, and I will come talk to them when I am done with what I am doing. They have to wait. I consider myself a commodity that all students have an equal right to, and I am not going to deprive a student of my attention because another one decided to start acting right after misbehaving.

I also, to prevent power struggles, when a student engages in problem behavior during school work, I remove access to the school work until the student shows they are ready to get back to work – and without fail I notify them what they have to do to get their assignment back. This also means my primary punishment is boredom or lack of access to “stuff” to do. I started this because it prevented things getting thrown at other students, and it just happened to work out that it is an effective strategy (here is some research).

If a student uses a tantrum or tries to simulate a meltdown (not having a meltdown but trying to put on a huge show to contact escape), or otherwise makes a fuss to avoid work, I take the work away and let them know when they are done they get it back. But they have to complete as much of their assignment as their friends did before they get fun activities. I do this with a very clinical, stony faced expression and do not respond or punish the student if they hit me at that point, it is just another bad choice, but they are reacting to a statement, not exhibiting behavior that needs addressing. This is the same if “anxiety” or “depression” are used as excuses. (Note, I say this as an absolute because by experience – both personal and professional – I can tell true anxiety and depression from malingering and excuses. Same goes for distinguishing fake tantrum crying from a true meltdown).

If a student has a true anxiety disorder, we adapt the assignment to drop the anxiety levels down. Same for depression to avoid learned helplessness. If a student has a meltdown, then I evaluate what the trigger was and we work on that in the future. A student having a meltdown means I change the day to address academics later, once they are back from crisis. Usually, I have them complete 1-2 questions from what they needed to do and then move on with the new task. That way they can be reinforced for working on all assignments, but we do not punish the presence of a meltdown because that only leads to learned helplessness.

Explosive and/or dangerous behaviors are dealt with using MANDT de-escalation and physical intervention procedures as necessary. Every time I use these procedures I start a functional communication training with the student and all other plans get put on hold (here).

If a student used violence to escape work, then they become very well acquainted with me, more so than they would like. We go into an empty room devoid of any stimulus other than writing utensils and assignment materials. And we work. I shrug off any attempts at violence and keep the academic pressure on until the student realized they are not going to get reinforced for violence. If they ask for a break, I give it. If they ask for space, I give it. If they tear up their paper, I tape it together, and we get to work.

When a student has difficulty in emotional recognition, self-regulation, or any other socio-emotional difficulty we start a brief study of either Social Thinking or Zones of Regulation depending on which program best fits the student’s needs.

I know some may say that this is all fine and good, but what about my severe kid, nonverbal kid, Down’s kid, violent autistic kid, etc. They are too low for this to possibly work!

Well, I beg to differ. Experience has taught me that often times these so-called lower functioning kids are actually more attuned to my approach than some higher functioning kids.

So, my recommendation is to do the exact same thing as you would do for a highly verbal, naughty, typical kid. I have used this method for severely disabled students that were nonverbal all the way up to Genius-level IQ twice exceptional autistic students that had learned how to manipulate situations to get power and control. Empowering kids works. Seems to me that sometimes handing over power is the only thing that does work with the truly tough kids.

Like any teaching, we have to differentiate it to the level of the student. If they are nonverbal, then adapt and use their communication modes. If they use eye gaze, then develop choices and iterate through options until the student signals approval. If the student is a smarty-pants, leave them to write their own plan. I have even had a student write a literal contract because they did not believe I would be honest. So I had him write the contract, and another teacher came in and notarized our signatures.

I have also had a few autistic students that found mentally taking another’s perspective quite difficult. We had to make a video model with the things this student was doing happening TO HIM. It was always acting, and no one ever made this student uncomfortable, in fact, they loved making the video. Watching their face when they saw someone “hurting” them or “being mean” or “bullying” them was a revelation. They knew they did the exact things they were seeing. But watching themselves “fall victim” was enough for them to demand immediate punishment (which I refused to give) and then they proposed a series of draconian requirements for them to repay others. I walked them back to just changing their behavior and apologizing to others they may have hurt. I point this all out to suggest that there is NO ONE so disabled or so socially inappropriate that they cannot respond favorably to this type of system.

Most kids will just be happy to be in control of something. Often they forget to misbehave because they are too busy marking themselves down as not being naughty.

What does my intervention look like

I will start with the youngest ages I work with, Kindergarten. I start at this age to illustrate a point. That point is that you can teach kindergarteners how to behave, even disabled kindergarteners.

My example is going to be a student I worked with a few years back. This student, who I will call Johnny, was challenging. Before I came into the classroom, Johnny had bloodied the mouths of 3 paraeducators and had become a sniper with wooden blocks, being able to hit his target from across a classroom. Johnny also had taken to bolting out of the classroom for two purposes: to run into a certain classroom to either break objects or bang the blade of a large paper cutter up and down; or else he would run into a locking bathroom on the other side of the school and barricade himself in. This was a daily occurrence, and by daily I mean this student was being restrained in place to do his work, had his hand held in a choke to walk down the hall. In other words, he was a handful and at the edge of being “disinvited” as one teacher put it, from attending school in this classroom.

When I came in, I followed the school plan for the first two weeks. These were ABA-derived plans designed by a district employed BCBA. Here are the particulars:

When this student misbehaved the staff were to engage in planned ignore and to praise the replacement behavior (Differential Reinforcement of Other Behavior – DRO)

When this student misbehaved the staff were to engage in proximity praise, meaning peers that are behaving were to receive reward

When this student attempted an elopement, they were to be touch prompted (e.g., forced physical guidance using MANDT procedures) into the room and placed in seclusionary time out in a Time Out Booth (a punishment contingency)

When this student attacked another student or teacher, they were to be placed in seclusionary time out in a Time Out Booth (a punishment contingency)

This plan was an utter and complete failure. Analyses of the function of the behavior did indicate attention seeking, and the BCBA programmed accordingly. The problem with that was this student was not acting for attention in the classroom. Not one bit. They actually preferred to be in a spandex body sock and under a bean bag where no one could see them. When it came to the hallway and eloping, that was 100% for attention. The student wanted to be chased and wanted to get the goat of the teacher whose items he would break.

When it was clear the ABA behavioral intervention plan failed (based on my fidelity data and a district advisor’s data the plan was carried out with >95% fidelity), I was tasked with developing a new plan.

Here it is (in order).

This student worked 1:1 with me for 2 days. As we did work, I explained what was going to happen for the rest of the week and the next week

I told him his behavior was unexpected and I was going to help him to express his needs in a way that was not going to get him in trouble or scare teachers/students

I asked him for options that he could do instead that would contact reinforcement rather than punishment

For the next two days, I walked Johnny through his options. If he wanted to throw things, he would tell me. When he wanted to punch or kick., he would tell me. When he wanted to run, he would tell me.

After that, I worked with Johnny on the Social Thinking and Zones of Regulation curriculum while still working on earlier steps in the process.

So how did it go?

Week 1 was less than a party. I was cussed out nearly constantly. Johnny did not like having our conversations. He knew I was going to stop him from misbehaving. I know this because he screamed at me many times, “I don’t want to tell you. I want school to be done. I hate you. I will hurt you. You don’t let me have fun”. During the last statement, he would act like he was cocking a shotgun and shoot it at me. He attempted to elope 8-10 times. He tried repeatedly to grab blocks and throw them at my head. He tried to punch me in the mouth … a lot.

Each time I calmly, and without showing any emotional response, stopped the behavior. I said nothing. I just made sure the behaviors did not happen. I did not want to give any potential fuel to the fire behind any behaviors. So I didn’t, I only frustrated the attempts. When Johnny bolted and I was unable to stop them, I sat in the hall by the door furthest away from where Johnny wanted to run and watched (and texted the teacher down the hall to shut her door). When he locked himself in the bathroom I waited on him to get bored. It took all of 2 minutes and he came back and apologized.

Starting the second week I started to get my pants or shirt pulled on and a tiny whisper saying, “I am going to be bad”. I leaned down to eye level and whispered back, “What are you going to do instead”. This was often met with either a hug or else the student would run away and dive under a bean bag or lunge toward the body sock he preferred.

This was the extent of behavior modification I engaged in. Behavioral change only took a week. And I assiduously avoided using any kind of behaviorist interventions as they had proven entirely ineffective before and only made this student’s behavior exacerbate.

Now, as to the Social Thinking curriculum, that was the hard part. Kindergarteners are not typically ready for social skills lessoself-reflectionlection sheets, but I felt this student needed to know how they were making others feel. This was hard for Johnny, but he understood with time that he was scaring people. It was a game to him, but teachers and other kids were scared.

He never wanted to scare them or make them feel bad. He was having fun like he saw in movies (His favorite movie of all time was Kill Bill, which might explain the tendencies toward violent play). Once he understood that he was being naughty, he changed his behavior. He was still naughty, but it was not using such grand gestures as before, but rather it was work avoidance, hiding in the classroom, typical kindergartener silliness.

Fast forward to summer school. Johnny and his class are walking down the hallway and he sees me. He stops, looks me in the eye, put his hands behind his back and says, “Hello Mr. Ryan, how are you today? I am still being good!” and he walked away with his class. The teachers just stopped and stared at me. They could not believe that a) he could speak as he was selective mute other than screaming, and b) that he reported he was being good without me asking. I let them know that we had developed a rapport and that he trusted me, and thus valued my opinion and knew I valued his.

My point with this example is that Johnny did not need to have his behavior modified. He needed to be taught how to behave. To be given the tools necessary to understand how he was impacting others. The behaviorist method only emboldened him. A more cognitive approach (that of training the mind in understanding rather than consequences), solved his issues in virtually no time flat.

Now to more, quick examples

My mother uses the same methods that I do. She has recounted some examples that are illustrative across a number of behaviors:

She had a student that was a Brony and would bring his My Little Pony toys everywhere. It was clearly turning into an autism-like obsession that was getting in the way of his daily function. Importantly, it is not the brony or the dolls that are the problem. Those are fine, it was the fact that this student was beginning to act like a preschooler with these ponies. So it was clearly inappropriate and not just a benign interest. Since it was becoming a problem, my mother pulled this student aside and told him that My Little Pony was for home. When he was in his room he was 100% allowed to enjoy My Little Pony and his toys. But when he was at school, he had to act like a middle school student and not younger than he is. She then walked away. She later found out that this student had put his toys away and told his mother that he was growing up and getting too big for those toys now.

She had a student that was running out in the field every recess doing a very happy autism stimmy flappy dance. He also was very sad that he did not have any friends of people that would play with him. My mother pulled him aside and asked him if he knew what he looked like when he was pacing and stimming out at recess. He thought about it for a minute and walked away. He then changed his behavior. He started trying to interact with peers at recess and not just stimming all recess. He did not realize how his behavior was affecting others. As soon as he did, he effected a change.

She had a student that would swear. And he was good at it. He had come from another state that had taught him to just write the words instead. So she was hearing the words and watching this kid write them down. In this case my mother had a number of conversations with this student and the swearing was going down, but it was a peer tutor who finally put the coup de grace on the language. As was reported to my mother by this girl, at recess this kid was cursing, and the girl pulled him aside and told him in no uncertain terms that at that school they do not talk like that. And that she would not be able to be his friend if he swore like he was. He stopped right then. he even asked my mother if she knew they did not swear at that school. Mom responded something along the lines of “is that right?” and let the student stew. He actually did not know he was not allowed to swear and that he was repelling potential friends. His behavior changed on a dime as soon as he found that out.

My mother had a student that was behaving and refusing to do work in class. Finally, in a moment of either exasperation or inspiration, mom pulled the kid aside and showed him that the answers to the worksheet were in the book. IT HAD NEVER ONCE EVEN OCCURRED TO HIM that the answers were in the book. To this kid, school had to feel like a bunch of mean teachers being rude and unfair. Armed with knowledge, the student behavior faded away since he now had the skills and knowledge necessary to succeed at school and not feel inadequate.

Some of my examples:

A student was running up and down the hallways making a horrible noise akin to a howler monkey every day. They also were constantly standing up in class and making a screaming noise. I asked this student why they were making that noise. They said they did not know. I asked if they knew how others felt when they heard it and the student said they did not know. So I initiated a conversation about voice volume in the halls and echoing and how that hurts people’s ears. We discussed how this student had to wear noise canceling headphones the year prior because they could not handle excessive noise. When the student heard this he asked, “Am I hurting people?”. I asked him what he thought and he was quiet. The next day his volume was greatly reduced, and by the end of the week, he had stopped yelling altogether.

A student was constantly reporting on everyone in the class when they were out at recess. The other students were startling to bully this student and isolate him on the playground and in class. When this student came to class one day they kicked over a desk, stood on it, and notified everyone in the class that they were going to die for crossing him. This continued for a week and escalated, This student started lashing out at the other students by throwing items, kicking them, and overturning his desk aggressively. When I was called in the classroom had instituted a plan to proximity praise systems for good behavior, and set up a DRO system whereby they rewarded behaviors that were “good” and simultaneously punished the behaviors this student was displaying. This had only served to make things worse. The student had taken to swearing at teachers and threatening to kill them in their sleep. I had some discussions with the student. I asked for why they were showing their behavior. They said it was because they were angry and they hate themselves when they are angry. So they were acting like they felt. He wanted to get kicked out of school and he wanted to get arrested. We talked about emotions and how they are okay. Even anger. If he has a hard time controlling himself when angry, that is okay. We can practice. Oddly enough, at that point, he walked back into class, apologized to everyone, and told them his behavior would change. I did not ask him to do this. He did not even warn me he was going to do it before he did. He would stop tattling, and he would stop hurting and scaring people. And he kept his promise. He and I worked for the rest of that year and the next on managing emotions and learning how to just live with being angry. I ended up buying him a copy of the Zones of Regulation so he could have it and work with his mom and dad over the summer.

A student with poorly developed social skills that everyone thought was autistic but wasn’t started mainstreaming. Unfortunately, as he had been in self-contained special education classes for all of his schoolings, he was a bit naive when it came to navigating the elementary school social situation. He got in trouble for the following because kids were doing it and he was working to fit in and be friends: He peed in the sink instead of the toilet in the bathrooms. He peed on the floor rather than the toilet (and I mean nowhere near the toilet stall or urinal). He googled some rather creative porn searched on the school computers. The general education teacher asked me what to do with him. The special ed teacher whose class I took him out of punished him severely, but the punishments were making the adults lives a living hell rather than this student (he had Tourette’s and they were taking away recess, so he was not able to run out his excess energy. So he was break-dancing all afternoon in class). I explained the method of educating him as if he did not actually know any better than what he was doing to the general education teacher and the principal. The principal was already on board because, like me, she saw this all as rather hilarious and benign given the behavior was not actually hurting anyone. So the principal and the teacher explained to him in excruciating detail what was expected of him and how his behavior was deviating from those expectations. He apologized and did not act out like that again. He came up to me the next time I was in the school and asked me why his friends wanted him to do things that would get him in trouble. I told him it was because they thought it was hilarious to see someone do those things, and that they wanted to do them but did not dare because they would get caught. I even told him that it was because he had a disability that they were teasing him to get him to do this things. He asked if they would still be his friends if he made better decisions and I said that some would and some would not. But the ones that stayed his friends would be great friends for years. The other ones just wanted to see him get in trouble. He thanked me for my honesty and told me he was going to be a better kid from that point on and not (and I quote) “be anyone’s little bitch” from that point on. And, he wasn’t.

My final example is a boy with fragile X syndrome I worked with. He started the year getting in trouble by coming to school 2 hours early and standing in the lunch room flipping off the teachers and saying crude things to girls in Spanish. He also would wait until the opportunity arose to inflict maximal chaos and would sweep everything off tables in the lunch room during breakfast. Then he would run a way and laugh. He also would randomly punch people for what we could tell was no specific reason. He also would eat his decidable books and any materials the teacher gave him, laminated or not, entire pencils, erasers, and even the fabric eraser. He was a mess to say the least. He also was selective mute so it was hard to hold him to account since he was unable to communicate when in trouble and would just stare. So when I got involved it was tough. In this case I did a lot of talking. I told him how his actions made other people feel. I let him know that since he was acting in a very unexpected way, others did not know how to act, so they got very anxious and scared of him. This was not conducive to having friends or being able to stay in school with peers rather than being moved into a classroom with only an adult and school work. He did not like the idea of not being near friends. So we worked on a plan. I gave him time and space to be able to speak so he could communicate his ideas to me and I would not make a big deal of his selective mutism. I asked him what he could do when he felt like being naughty and he said, “be naughty?” I asked how he would feel if people knocked his breakfast away and he said, ‘I hit them”. Figure int that was a start, I ran with it and informed him that the kids did not hit him because they did not want to get in trouble. He went a bit ashen and asked if I was being honest. I said yes. He thought he was having fun and they were too. No one was hitting him, so it had to be good fun, right? His behavior did not stop immediately, but he allowed me to help him shape his behavior toward more appropriate behaviors. Like a number of other students, his naughty behaviors went from violent and aggressive (and eating his school work in this case) to just normal age-appropriate naughty. In this case he started to talk in class and hide things from the teacher to get her attention.

Conclusion

It is my resolute belief that all students can learn to control their behavior. They are not slaves to stimulus-response contingencies or to “dark thoughts”, anxieties, or depression. As teachers and therapists it is our responsibility to help disabled children and adults to navigate the world. How to be social. How to be appropriate. How to get what we want. How to stay out of jail.

My approach is simple. Empower the student. Use ABA-inspired data collection methods to collect data on behaviors, but then look past the surface behavior and identify what thought processes underlying the poor choices. Then help the child overcome those processes by trial and error learning in a safe and loving environment.

Simple. And sensitive. The students will feel and respond to your compassion. And honest compassion breeds trust.

TW/CW: This post will discuss suicide, physical and sexual abuse, substance abuse, and interactions with law enforcement/authority. I will address these topics explicitly, as I feel that the information needs to be given directly.

This post is about what challenges emerge when autistics grow up. I know most people do not comprehend this reality, but autistic kids become autistic adults the moment they pass 18 years of age – whether we accept that fact or not. The problems are not going to get any smaller with age. It does not become easier to navigate the world as we get older. In fact, the unspoken rules, cues, and discrimination only increase and the cost of failure increases.

In this post I will refer back to the previous 3 posts regarding challenges and difficult conversations that need to be had with autistic students and children. The same conversations I discussed one earlier posts need to occur with adults, but it is always easier if we have these conversations with autistics while they are young.

The takeaway of this series of posts is as follows: We are often hesitant to talk about sex, suicide, menstruation, physical and sexual abuse, etc., because we are afraid to broach the topic with our autistic loved ones. We do not want to worry or scare them with these “icky” or seemingly inappropriate topics. Well, guess who is already worried and anxious about these things: your autistic loved ones. What we need to do is to be the “adult” and be willing to engage in these difficult conversations when our loved ones seek our help. We are doing our loved ones a favor by being honest, assertive, and direct; no matter how difficult or uncomfortable the topic of conversation may be.

An Educational Aside

So, I was speaking with a parent of an autistic student and they suggested I write a post about the conversations I have with students because I do not shy away from difficult or uncomfortable topics. I thought about what she said a lot and I realized I am unique among a lot of teachers because I am willing to talk about things like puberty, sexual orientation, CreepyPasta, depression, or suicide with students so long as the situation and conversation are appropriate. And I do it with a nonplussed expression that gives the students a sense of calm, or at least a perception that I am in control and not surprised by their questions (this video shows two great police interrogators doing exactly this).

I feel this is an overlooked yet important role for a teacher. Anytime I see students starting down a tough path I want to intervene before they go so far they reject outside help. In hindsight, I worry how some situations would have turn out had I not taken the time to help the students get a grasp on their own thoughts and feelings.

This is part 4 of a 3 part series on crucial conversations. See the first part here for a description of my approach and rationale for taking on these conversations, here for Part 2, and here for Part 3. Part 4 just kinda happened unexpectedly, much like the Spanish Inquisition.

Suicide

With regards to suicide, a recent paper came out from Sweden that pointed out that autistics are 9 times more likely to die of suicide than the general public (other studies came to more drastic conclusions). Furthermore, those with so-called “mild” autism and women/girls on the spectrum are more likely than boys or those with so-called “severe” autism to attempt suicide (get the paper here and a press release for the layperson reported on by Autistica UK here).

Now my earlier post on this topic covers how I handle these cases of suicidal ideation and talk regarding suicide, so I will not rehash those ideas here. I will explain a reality that I have recently realize I have taken for granted: Autistic people have a hard time trusting nonautistics, but when they do trust, it is a deep, meaningful relationship that lasts.

I occasionally receive phone calls from one of the students discussed in the previous post. Whenever he is extremely depressed and wanting to really hurt himself he sits down with his mother, puts the phone on speaker, and calls me. His mother sits and listens, but does not engage unless my student brings her in on the conversation.

We go through all the steps I described before. I listen. I listen a lot. I let him cry. EVERY time he shows emotion, I validate that emotion, and let him know that I do not judge him for feeling rage, anger, sadness, depression, anxiety, fear, etc. They are good emotions and need to be expressed. He needs to hear this, otherwise I would just be silent. I let this young man express himself and use me as a sounding board and safe place where he can work out his issues.

When I get together with this young man in person, the first hour is usually like the phone calls. He has a flattened affect, difficulty responding to stimuli and questions, etc. Then he lets out any anger he is feeling and frustration. After a while (~45 min), he is able to talk out his issues and we can get on to topics of conversation that he enjoys (i.e., The Eleventh Doctor or how to train his cats to bite his brother but not him).

I have told him and his mother that I am available 24 hours a day. I even have their phone number programmed into my phone as an emergency bypass so they don’t get blocked by my “do no disturb” filter at night.

I thought this was a unique, isolated situation unique to this student until I noticed my mother has the same thing happen to her. She receives phone calls from depressed former students. She handles them the same way I do. She steps away from noise so she can give full attention, she listens, and she asks basic questions to guide these students to a better spot.

What I think is important here is the fact that in both cases of these young men calling myself and my mother, is not actually that they call us. It is that they know deep down we can be trusted and they can talk to us about anything and we will help them without agenda or frustration at them. We will not contribute to their emotional stress and we will not try to solve their problems for them. We will just listen and empower them to come to the right solution for them.

These former students of ours feel they can communicate their emotions to us honestly and we will still respect and love them after the conversation – however unpleasant it may be.

I feel this is a critical point because these trusting relationships were built early. In my case elementary school and in my mother’s case she bonds with students in intermediate school / junior high. These relationships last for years, decades even. What floors me is that after all that time, students that call my mother still have not found other people that they trust anywhere nearly as much as her.

That means she is the only one the students feel comfortable talking to about their problems. Think about that for a second. You are out of high school, but one of your 7th grade teacher’s aides is the only one you feel you can talk to about your problems. That’s a rough situation.

Physical and Sexual Abuse

I have gone into this before but I am going to be a bit more specific regarding adulthood and physical/sexual abuse. The graphic below is a quick primer on the manner by which disabled and autistic people may potentially be abused by their loved ones in partner relationships.

So far as statistics are concerned, reports range from 50-70% of adult autistics have been physically or emotionally abused by someone they trust, and 90% sexually abused in some form. And these are numbers for adult autistics-not kids (those numbers are even higher). A 2014 survey in Britain reported the following (and it is important to note this is likely a vast underestimation of the frequency).

Half of 1,300 sufferers questioned by NAS said they had been abused by someone who they thought of as a friend, 37% said they had been manipulated to do something they didn’t want to do by these so-called friends and 44% said fear of abuse or harassment led them to not want to leave the house.

Meanwhile a quarter of those polled said they have had their money or possessions stolen.

This goes along with what I reported in the previous posts on this topic but I will reiterate here:

More than 90 percent of people with developmental disabilities will experience sexual abuse at some point in their lives. Forty-nine percent will experience 10 or more abusive incidents (Valenti-Hein & Schwartz, 1995). Other studies suggest that 39 to 68 percent of girls and 16 to 30 percent of boys will be sexually abused before their eighteenth birthday. The likelihood of rape is staggering: 15,000 to 19,000 of people with developmental disabilities are raped each year in the United States (Sobsey, 1994).
…
People with developmental disabilities may not realize that sexual abuse is abusive, unusual or illegal. Consequently, they may never tell anyone about sexually abusive situations. People with and without disabilities are often fearful to openly talk about such painful experiences due to the risk of not being believed or taken seriously. They typically learn not to question caregivers or others in authority. Sadly, these authority figures are often the ones committing the abuse. Many special education programs have encouraged students to be compliant in a wide range of life activities, ultimately increasing the child’s vulnerability to abuse (Turnbull, et.al., 1994).

If we do not teach our autistic students and children how to care for themselves and advocate for themselves, this cycle of abuse will not stop at age 18.

Just the other day on twitter I was conversing with some autistic folks regarding physical and sexual abuse from their spouses/partners. I am not going to link to it since some of them have private accounts and I am going to respect their privacy and avoid accidentally doxxing them. Resoundingly, they communicated that they felt personally responsible for the abuse they were receiving, and despite being angry at the perpetrator, did not assume it was the abusers fault. They also communicated that they were lucky to find anyone willing to love them and it was their responsibility to stay with that person and give them the benefit of the doubt.

Some of us tried to convince these individuals that they were not responsible for their being harmed, to little avail as their emotional blame was already well established.

This is a problem that is not going to go away. We MUST advocate for our autistic loved ones and teach them what others can and cannot do to them. Otherwise the cycle of abuse will just keep turning over.

Again, I am going to harangue on communication.

By our actions as teachers in school we unintentionally teach autistics that their opinions and reports and complaints are less valid than those of their nonautistic peers. So they learn the survival strategy of internalizing everything bad that happens. They blame themselves. This is what we have to fix.

I approach autistic people the same way I approach everyone, trust but verify. I assume they are telling the truth, at least from their perspective. I want them to know I believe them so long as they tell the truth. I do not question them. I do not twist their words. I believe them.

It is precisely because I believe my autistic friends are telling the truth they are willing and able to tell me the whole truth, even inconvenient and unpleasant bits.

Substance Abuse

Self medication is an issue for all populations with disabilities. Autism is not an exception. Unfortunately the vast majority of the literature available on the subject is asking the wrong question. Scientists are trying to answer the following: “Why does autism make people prone to become addicts?”

I think that is the wrong question. It comes with a ton of loaded assumptions.

I frame another question that does not have as many troublesome assumptions: “Why do autistics seek out addicting substances?”

I think the answer to this question is exactly the same answer as for the rest of us. We seek out addicting substances because they offer a reduction anxiety, they release inhibitions, and they can be relaxing. In extreme cases, for an escape from reality.

Twin studies in Australia suggest that, like suicide, it is actually individuals that show “milder” autistic traits (autistic women and so-called “high functioning”/”mild” autistic men) tend to abuse alcohol, nicotine, and marijuana more than the general population (or their non-autistic twin in this study). Those with more profound autistic symptoms as reported in these studies tend to abuse substances less, but research suggests this is likely either due to decreased social access to alcohol, tobacco, or drugs, or else due to the need to live in a supervised setting wherein access is explicitly controlled or outright prohibited. Interestingly, the researchers found that autism had nothing to do with whether drugs or alcohol were experimented with in the first place, but rather the patterns in the data suggest that autistics have an easier time becoming addicted to substances of abuse. Scientists have posited that this is due to some addictive personality traits, some form of compulsive behavior, or just because they receive a greater reprieve from anxiety than the average nonautistic person does. To date there is still no established answer, and my guess is that no-one has actually surveyed autistics regarding this question.

Interestingly, it is hard to find information that is reliable about substance abuse within autism. But it is VERY easy to find rehab centers with wings designed to cater to the needs of the autistic addict as they detox (access to cognitive-behavioral-therapy, sensory accommodations, etc). This in itself tells me there is a larger problem of addiction in the autistic community than science has been able to ascertain.

So again..solutions. My opinion is that, again, no one has given the appropriate information to the autistics regarding drugs and alcohol and unfortunately talking about these things theoretically may not always answer autistics questions, but that shouldn’t stop us from trying and keeping communication going. We can always do our best to teach and help and inform. Just leaving the autistic to their own devices can no longer be an option. We need to break down the why on dangers associated with intoxicating substances. We often use scare tactics to dissuade alcohol, tobacco, and drug use with our youth, but we do not verify that these same lessons are heard by autistic or disabled populations. When we teach autistics about drug and alcohol use, we need to break our arguments down to explicit, step by step, nitty-gritty elements. Give the information to the autistic person, have a dialogue with them about their options, and then have confidence in them to back off and let them make their own, now informed, decisions.

Interactions with Authority/Law Enforcement

I have a few stories about my brother Kyle here to illustrate the importance of communication when interacting with law enforcement. To reiterate his background, Kyle was my twin brother. He was a nonverbal autistic that was perfectly able to function at school and home with a computer to speak for him. For more info please go and enjoy the blog posts under what I call the Kyle tag.

Kyle was generally compliant and fun-loving, but he was not slight in stature and if he got frustrated or agitated he would make a piercing medium-high pitched scream (loudly vocalizing EEEEEE!). He also would move around aggressively and lurch back and forth to get others out of his space. He never really hit people, he would pinch me and my mother on occasion, but more than anything he would actually pinch and bite himself on the arm. Hard. Basically he was much more willing to hurt himself than others. In fact, even when he was a child he was more willing to attack teachers if they were disciplining other students than if they were punishing him.

I am going to tell the stories of the two times Kyle was put in handcuffs. He was not an adult for either of these, but there are lessons we can extrapolate to the situation of autistic adults. Mostly regarding communication and how easy it was for Kyle to appear noncompliant, even when following directions to the “T”, simply because he was unable to verbally speak to the officers and he lacked access to his assistive technology.

The Public Library

The first time Kyle was handcuffed was when he was in 7th grade. He, my mom, and I would go to the library after school. Kyle would look at magazines and mom would give him space so he could be independent. I would go off and hunt down as many books as the library would let me check out and set myself down to start reading one of my new books.

On this particular day, Kyle deviated from his normal pattern. Instead of staying by the magazines like he always did, he went into one of the offices and started looking in one of the desk drawers. When he was told to stop what he was doing, he ignored the librarian and continued searching in the drawer. Because he was noncompliant, the police were called. When Kyle did not follow the officer’s instructions, he was handcuffed, and quietly led out the side door of the library. At this point Kyle did not make any sounds to indicate duress or anxiety. He just quietly allowed the officer to put on the handcuffs and then Kyle compliantly went with the police officer.

When they got Kyle into the police station (which shared a parking lot with the library, so this was a 2-minute walk max), they sat him down and started asking him questions. Every time they posed him a question he stood up and walked toward a computer that was on at another desk. They officers told him to come back and sit down, which he did. Every. Single. Time.

They finally got his lunch card that had his name on it and called the Junior High and spoke to the vice principal. The vice principal told them that Kyle was not the kind of kid to steal things from desk drawers and told the officers to go and find my mother, who would surely be in the library.

The police came over to the library and found my mother and asked if she was Kyle’s mother, she said yes and the officer told her that Kyle had been arrested and would she come over to the police department.

When they got over, Kyle tried to get mom to take off the handcuffs. When she asked the police officers, they said they could not take the cuffs off yet because Kyle still had to answer their questions. Mom, being mom, sat respectfully and watched the officers asking Kyle questions and Kyle immediately trying to go over to the computer to answer the questions, just to be told to sit down – which he did immediately and without visible frustration.

Mom finally told the police officers that Kyle could not talk and he was trying to answer the questions whenever he stood up because he talks using a computer (see here). They said they did not want him touching the computer because there was a work in progress on the screen. This was the mid 1990s, so computers were not as easy to alt-tab away from tasks as they are now.

After a bit more of the back and forth the officers closed out what was on the computer and opened a word processor. They asked Kyle his name and he walked over to the computer and tried to type handcuffed. He couldn’t, so they had to loosen his handcuffs. They asked him his name, and he typed it. They asked him his father’s name, and he typed it. They asked him his mother’s name and he turned around, looked at them like they were insane, and pointed to her as if to say, “ask her, she is right there” or else, “you already know that”. Regardless his communication, it was a hilariously sassy look he flashed them from what I am told.

After this back and forth and everyone stopped laughing after Kyle was pointing at mom rather than typing her name, the police took off his cuffs. Kyle hastily tried to grab mom’s hand and walk out, but mom told him he needed to stay and listen to the officers because they had to deal with a situation. The police had a long talk with Kyle about how he was never to do what he did ever again and property rights. Mom went into the school and made the classroom teacher change the system so Kyle did not have access to the treats himself any more–and they were moved out of that desk.

Now, the background to all of this was that in Brigham City at the time there had been a pretty big problem with drug addicts, often while high, going into businesses and rifling through desks to get cash. They would just come in, grab money, and leave.

Given this was 1994 and Kyle always had an eye for style, he was wearing very baggy pants and a big baggy, long, brightly colored T-shirt. That is to say, he dressed like a lot of these drug addicts did. Like this photo below from a story on the drug use culture in 1994 in fact…

Partly because he was a person that was usually smiling and he dressed fashionably, no one in public ever jumped to the conclusion that Kyle was anything other than normal. When I went out with him, usually people would avoid me and go talk to him. And he would just smile and enjoy the attention. After a while I would have to tell them he cannot talk, but only when they looked ready to take offense at his not answering.

Kyle, at school, was given rewards in the form of treats from a desk identical to the one in the library. Because he was trustworthy, the teachers would just send him over to the desk to open the drawer, and find the bag of treats and get one. He never went to the desk and took treats without permission. At least until that day in the library.

…can you see where I am going with this yet…

So when he was going through a desk he did not have permission to access, he was profiled as one of these drug users looking for money. And since he was not communicating with the police officers, they would have been in their right to put him in a cell rather than in a comfortable chair while they tried to figure out what was going on.

The great part of this story was what happened next. The mayor got wind of what happened and set up a “Handicap Awareness Fair” and mandated that all city employees attend and learn how to handle disabled people in the city.

This was a perfect scenario. No one messed up. Kyle was treated fairly and amicably given the situation. It could have gone sideways but it didn’t.

To help with scenarios like this, my mother got Kyle a laminated card he could carry in his wallet. The other side had his name, my parents’ info, and my aunt as an emergency contact. For Kyle the “I may recognize and use some sign language”, “I may be able to ‘talk’ with a computer”, and “I may appear agitated when I am frightened” were marked. Others could have been marked but my parents chose the essential ones.

My point with telling this story is that if this situation happened today, I doubt highly it would have gone so innocently. Brigham City in 1994 was (and still is) a very safe place and the police have reasonably little reason to fear violence. Back then it was virtually nil. So when Kyle was appearing to be noncompliant/noncooperative by standing up and trying to get to their computer, they just verbally redirected him and tried to figure out how to proceed.

In today’s world, given Kyle was not a small guy and he was rather strong, I perceive he would have gotten roughed up a little during the arrest and he would have been put in a cell as the police try to figure out why he is being uncooperative and apparently refusing to answering questions.

An Overreaction to an Unfair Teacher

The other time Kyle was put in handcuffs was at school. Kyle was in a life skills class to learn job skills and was doing an assignment that was transcription. The teacher told him what he had to do and gave him his assignment.

Kyle finished it with lightning speed because this assignment happened to require one of his skills. Typing. Kyle could type >100 words per minute using just 6 fingers and he rarely, if ever, misspelled a word once he had seen it once.

So Kyle finished rapidly. And as a result was given a lot more work to do. I have only heard, but as I heard it he was given a PILE of work that could be measured in centimeters, not merely pages. So Kyle flipped out.

He screamed. He started running in the room. He moved aggressively. At home we know these are behaviors he used to clear the area and give him space, but if you do not know what it looks like Kyle was going to start indiscriminately opening a can of whoop-ass.

This was sufficiently terrifying to those in the room that the peace officer assigned to the school came in and had to defuse the situation. This involved putting Kyle in handcuffs and trying to talk him down. When my mother came in to help, she saw the police officer and they both realized they knew each other (my sister used to babysit the police officer’s kids).

Kyle was still highly agitated so the police officer was hesitant when mom suggested he undo the handcuffs so she could calm Kyle down. When the police officer undid the handcuffs, Kyle’s hands shot up above his head in agitation and mom had to help him calm himself down by gently touching his hands and speaking to him in a soothing voice.

The police officer was amazed at how quickly Kyle calmed down. The officer was amazed as he, legitimately, had perceived Kyle as a threat that needed to be forcibly restrained by handcuffs to preserve the safety of those in the room (again, he was not wrong to do this). The police officer had my mother show him what she was doing so he could remember those tricks if they were ever needed again.

Again, this was a perfect scenario. No one messed up. We were not angry Kyle was handcuffed. He appeared to be very dangerous and a threat so the office acted with appropriate restraint. The officer did not know him well enough to know which of Kyle’s behaviors were “back off” behaviors and which behaviors were actually aggressive.

These anecdotes get to what we are seeing in the news in 2017. With Kyle and an idyllic Brigham City of the time, both of Kyle’s interactions with the police ended up as ideal scenarios. That world of the past does not exist any more. Both civilians and police live in a heightened state of anxiety that leads to poor, impulsive choices, underscoring the need for us to help teach our autistic loved ones how to act in these stressful situations involving the police.

My solution, not to kick the dead horse some more, is communication. There is a movement afoot to teach peace officers how to communicate with autistics and how to correctly interpret their actions. We need to also teach autistics how to communicate with police and other authority figures. This can take the form of scripts, a card like Kyle had, or just practice repeatedly in real world situations until truly functional communication come naturally to the autistic person.

Conclusions

Basically, autistic children grow into autistic adults. Say that over and over until it sinks in. Unfortunately, the challenges of life and difficulty in necessary choices, independence, and social interaction become more complicated, more difficult, and answers are far less straight forward.

My solution to all problems is to build relationships early and provide education. As teachers and caregivers, we need to make sure our autistic students and autistic loved ones know they can TRUST us to have their needs and their best interests at heart. That way they know they can ask for help if they need it. And if they do not need help, we will get out of their way and let them grow up as they see fit.

And beyond everything else.

Help our autistic students and loved ones know how to effectively communicate their thoughts, needs, desires, and experiences. Then believe and respect their communication.

For anyone wanting to know more about autism as experienced by autistic adults, I recommend looking at the #actuallyautistic hashtags on Twitter and Facebook.

Please just read and soak in their opinions, challenges, and successes rather than engaging directly. It is a very different perspective on autism than that you see anywhere else on the internet or in advocacy organizations.

Note: The autistic twitter and Facebook communities also like to preserve the #actuallyautistic hashtag for use by autistics, so please respect their convention. They will interact with nonautistics using the #autism or #autistic hashtags.

The takeaway of this series of posts is as follows: We are often hesitant to talk about sex, suicide, menstruation, physical and sexual abuse, etc., because we are afraid to broach the topic with our autistic loved ones. We do not want to worry or scare them with these “icky” or seemingly inappropriate topics. Well, guess who is already worried and anxious about these things: your autistic loved ones. What we need to do is to be the “adult” and be willing to engage in these difficult conversations when our loved ones seek our help. We are doing our loved ones a favor by being honest, assertive, and direct; no matter how difficult or uncomfortable the topic of conversation may be.